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Wednesday, February 4, 2015

Why Native Americans are concerned about potential exploitation of their DNA

Until the advent of genetic genealogy, knowing your
ancestry meant combing through old records, decoding the meaning of
family heirlooms and listening to your parents and grandparents tell you
about the ‘good old days’. For anthropologists and archaeologists
interested in going back even further in time, the only reliable means
of understanding human history were trying to interpret ruins or
remnants of skeletons or other information uncovered at the site of
remains.

DNA testing has changed all that, allowing us to delve far deeper
into our past than before and with a much higher degree of accuracy.
Although there are many issues stirred by DNA testing, none is more
provocative than interpreting our family and tribal ancestries.

Nowhere is this more apparent than among the Native American tribes in the United States. I recently wrote
about a large scale genetic analysis among the American population by
personal genetics and genealogy company 23andMe, using its extensive
database to begin to decipher the ancestral origins of various ethnic
groups in the United States.

Though the study involved more than 160,000 people, less than less
than one percent of those who participated self-identified as Native
American. Rose Eveleth, a journalist writing for The Atlantic suggests that this lack of participation may have a lot to do with how native tribes perceive genetic testing,

But when it comes to Native Americans, the question of
genetic testing, and particularly genetic testing to determine ancestral
origins, is controversial. […] Researchers and ethicists are still
figuring how how to balance scientific goals with the need to respect
individual and cultural privacy. And for Native Americans, the question
of how to do that, like nearly everything, is bound up in a long history
of racism and colonialism.
[…] for Native Americans, who have witnessed their artifacts,
remains, and land taken away, shared, and discussed among academics for
centuries, concerns about genetic appropriation carry ominous reminders
about the past.

Eveleth references the widely publicized case where the Havasupai
tribe living near the Grand Canyon sued an Arizona State Unviersity
scientist for using genetic samples collected from the tribe to conduct
research outside of the purpose of the original study. The crux of the
issue was the consent form which covered a broad range of uses for the
samples–a fact that the tribes claimed was not explained to them
appropriately.

Although the tribe won the case, reclaimed the samples and settled with the university for $700,000, the issue captured the front page of the New York Times
and put “every tribe in the US on notice regarding genetics research”
as Native American tribal research ethics expert Ron Whitener quoted in an article titled “After Havasupai Litigation, Native Americans Wary of Genetic Research” published in the American Journal of Medical Genetics Part A.

Around the same time that the genetics of the Havasupai were being
studied, another high profile issue bought Native American tribes in
conflict with researchers. The ‘Kennewick Man’, an approximately 9000
year old skeleton was discovered by accident in 1994 in Kennewick,
Washington. The Umatilla tribe which were indigenous to the
region sought to reclaim the remains under the 1990 Native American
Graves Protection and Repatriation Act to bury it in accordance with
traditions. Anthropology researchers who wanted to study the
skeleton however, argued there wasn’t enough evidence to convincingly
show that the remains were Native American and therefore should not be
returned. This resulted in a widely publicized eight year long legal
dispute between scientists and the government that ended in 2004 with
the court ruling in favor of the archeologists, a decision that the tribes were expectedly unhappy with.

Now, the issue has come under the spotlight once again with the Seattle Timesreporting last
month that preliminary DNA analyses indicated that the Kennewick Man
was indeed of Native American ancestry. Apart from settling the academic
debate, this finding could reignite the social and political
controversy that surrounded the affair as the tribes engage in renewed
efforts to retrieve the skeletal remains and prevent further research on
it.

While it is understandable that tribes are concerned about how their
personal DNA (and that of their ancestors) is used, it is a stretch to
think that this information might be used to “develop biological weapons
or justify genocide” as Eveleth suggests.
Nevertheless, genetic testing be it for public health or
anthropological purposes is a tricky and thorny path to tread,
particularly among Native Americans as she points out in her article

So to many tribal people, having a scientist come in from
the outside looking to tell them where they’re “really” from is not
only uninteresting, but threatening. “We know who we are as a people, as
an indigenous people, why would we be so interested in where scientists
think our genetic ancestors came from?” asks Kim Tallbear, a researcher
at the University of Texas at Austin, the author of Native American DNA: Tribal Belonging and the False Promise of Genetic Science, and a member of the Sisseton-Wahpeton Oyate tribe.
[…]So what should a geneticist do, if she’s interested in exploring a
question that might involve gathering Native American DNA? It depends.
Tallbear says that long before any research questions are formulated and
samples are taken, the researcher should actually have a relationship
with the tribe. “I think people who want to do genetic research on
Native American topics really shouldn’t be doing it unless they’ve got a
really considerable history of contact with native communities.”

Razib Khan, an evolutionary genetics researcher at the University of California, Davis, takes
issue with how Kim Tallbear, the anthropology researcher at the
University of Texas at Austin and author of the book “Native American
DNA: Tribal Belonging and the False Promise of Genetic Science”
discusses the topic in the Seattle Times article (emphasis Khan’s).

Let’s not beat around the bush here, Native Americans and
the government and culture of the United States have a fraught
relationship. That is true. But today genetics has pretty much zero relevance to the various political debates and arguments.
Issues like tribal membership are determined by the cut & thrust of
politics, not genomics.[…] And contrary to the implication that
Tallbear makes, most scientists who work on Native American genomics
don’t do so because of a deep interest in overturning the religious
traditions of Native Americans, but because they are interested in the human story,
of which Native Americans are an essential part. Rather than ethnic
particularism the motives of scientists on the whole are those of
universalist humanism.
So one can understand why political activists might balk at the
inquiries of geneticists, as universalist humanism often causes problems
for those engaged in the great game of ethnic particularism. But what
about the academics who lend their voice in support of the latter?

In his analysis, Khan is frustrate–not at how the public is debating
the issue but specifically at academics, who give in completely to
personal biases and refuse to accept unequivocal genetic evidence. He
compares Kim Tallbear with sociologist and intelligent design apologist Steve Fuller, ending with this furious volley (emphasis Khan’s).

Here is an indisputable fact: science is not religion, and the two are very different enterprises.
If you don’t accede to this distinction, you have just lost all touch
with the empirical world […] The flight from empiricism is exactly what
has occurred to many scholars within science studies, probably because
that’s where the career incentives are.
Most academics who are skeptical of the “objective” “truth” “claims”
of “science” also agree with this fact when they have to put their
choices where they mouth is. If they’re diagnosed with “cancer” they won’t put chemotherapy in quotations or demand the services of a tribal shaman. It’s going to be the best science for them and their family. That’s not just a theory, that’s a fact.

While Khan is right, many tribes are quite reluctant to consent to
using their DNA or that of their ancestors for research. However,
antagonizing the tribes through public personal and legal battles might
only serve to alienate them further. In her Atlantic essay,
Eveleth outlines the more cautious approach taken by anthropologist
Dennis O’Rourke at the University of Utah and how the native tribes
contend with their mixed feelings about research.

… O’Rourke works collaboratively with tribes who are
interested in what he’s doing. […] Some tribes, he says, worry about it,
while others don’t. “It’s important to be very clear about what my
interest in the research questions are,” he said, “so if they’re not of
interest to the communities they can make that judgment very early and I
don’t waste their time in trying to pursue things that aren’t
acceptable.”
[Nick Tipon, vice-chairman of the Sacred Sites Committee of the
Federated Indians of Graton Rancheria] says that most tribes are
struggling to balance what good might come with what harm they might be
doing to tradition and their ancestors. “If someone could come to us and
say ‘yes, if we destroy this ancestor of yours, maybe we’d find a cure
to cancer,’ would we still have the same feeling? We’re still struggling
with that. Our traditional cultural feeling is you’re buried, that’s
where you rest in peace, but all societies change. We talk about it. We
wonder where the right answers are.”

This is one of the forks on the road where science and society could
part ways at the cost of both–to travel together will require a
commitment to strong science and common sense.

Arvind Suresh is a science communicator and a former laboratory biologist. Follow him @suresh_arvind.

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